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Crohn's Disease Forum » Treatment » Living on the toilet


 
05-11-2017, 02:34 PM   #61
Edgey
 
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Hey Edgey,

How are you bud?
I'm doing okay my situation hasn't change too much still stuck in the house

Sadly, it's a bit of both, I've had Crohn's fir 2-3 years and sometimes I go too much and sometimes not enough, but it always takes me a LONG time to get everything or anything out.
i'd much prefer it to take longer to come out that why i have some freedom lol but yeah dude it sucks hope you resolve your issues.

Was browsing through some posts and saw you were trying to find VSL#3. They can order it at CVS (you must have it special ordered) but they are quite expensive. I get mine at Costco Pharmacy (they special order it) and the cost is much less, 87.00 for a one month supply which I get two months out of. There is also a pharmacy discount card for 20 additional dollars off each order of it, but you need a Doctor to write you a prescription to be able to use that discount, and get online and print up the discount card from their website. Most Doctors will gladly do that, which means you can count it as a prescription and use your medical savings account if you have one, to pay for it.

i'm not too sure if i can do that here in England but i have tried the VSL#3 with no change but i understand those things take time so i may look into that and ask my doctor, thanks for the information buddy
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05-11-2017, 04:15 PM   #62
cmack
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Hey Edgey,

It is nice to hear from you, I'm sorry to hear you aren't feeling well. I hope things improve buddy.

Regarding the probiotics, I just saw my doctor and he said if you drink too much alcohol, (not recommended) or take Ibuprofen, (which is not recommended for us IBD crowd either) we need to take some more of the VSL#3. You don't necessarily need the whole course of it. You would take it for maintenance, say, every second day for a week or ten days. Then you take about one sachet a week thereafter.

The doc said that if you have to take antibiotics, you need to take the VSL#3 regularly every day for a couple weeks once the course of antibiotics is finished. He also said to keep in mind that the good gut bacteria lives on fiber and it is good if you can at least get a bit of fiber in your diet to help it survive. I know fiber isn't always an option...believe me.


Finest regards,

cmack
05-11-2017, 04:34 PM   #63
GI Jane
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Hate being stuck in the house. Thank God for Netflix.
05-22-2017, 02:04 PM   #64
Edgey
 
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hey all quick update been to see the Gastro doctor and he thinks the reason for going to the toilet so often is to do with the plumbing ie bile acids...
Because I've had the ileum removed i no longer absorb it, apparently bile acids are hella good laxative lol.
But that's only what he thinks so i'm gonna attempt to take more sachets of questran a day and see how that pans out
he also wants me to have another colonoscopy (dreading) but i guess its necessary :P

Sorry for not posting on here, I've been sleeping a lot lately due to my injection i think and i also workout in my house (extra tired)

gonna do some googling i guess

Hope everyone is doing ok
05-22-2017, 04:47 PM   #65
ronroush7
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hey all quick update been to see the Gastro doctor and he thinks the reason for going to the toilet so often is to do with the plumbing ie bile acids...
Because I've had the ileum removed i no longer absorb it, apparently bile acids are hella good laxative lol.
But that's only what he thinks so i'm gonna attempt to take more sachets of questran a day and see how that pans out
he also wants me to have another colonoscopy (dreading) but i guess its necessary :P

Sorry for not posting on here, I've been sleeping a lot lately due to my injection i think and i also workout in my house (extra tired)

gonna do some googling i guess

Hope everyone is doing ok
My understanding is my terminal ileum and a small part of my colon was removed when I had my resection. Do you mean that bile acids are not absorbed without the terminal ileum?
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
05-22-2017, 07:04 PM   #66
cmack
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Hi Edgey,

I'm doing pretty well thanks, I hope you are on the path to wellness. It's nice hearing from you buddy. I'm also curious about the same thing as Ron, about the bile.


Best regards,

cmack
05-22-2017, 07:10 PM   #67
Edgey
 
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My understanding is my terminal ileum and a small part of my colon was removed when I had my resection. Do you mean that bile acids are not absorbed without the terminal ileum?
yeah exactly the same as me Ron and yeah that's what i meant, at least that's how he put it to me

Hi Edgey,

I'm doing pretty well thanks, I hope you are on the path to wellness. It's nice hearing from you buddy. I'm also curious about the same thing as Ron, about the bile.


Best regards,

cmack
yeah well one can only hope lol and its good to hear that you're doing well bud
05-22-2017, 09:49 PM   #68
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yeah exactly the same as me Ron and yeah that's what i meant, at least that's how he put it to me


yeah well one can only hope lol and its good to hear that you're doing well bud
Thanks
05-24-2017, 02:14 PM   #69
GI Jane
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The nutritionist at the hospital told me it would happen and it is since I've been off oxy now. She told me cheese with each meal helps and for some reason a marshmallow. Toast, pretzels also helps me. I have to have a B12 shot monthly for life now too because of the removal of the TI. Apples no skin or applesauce. Rice and potatoes. Cooked carrots because of the pectin which helps the stomach too. Probiotics too of course helps but the refrigerated live kind is best.
05-24-2017, 02:23 PM   #70
ronroush7
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The nutritionist at the hospital told me it would happen and it is since I've been off oxy now. She told me cheese with each meal helps and for some reason a marshmallow. Toast, pretzels also helps me. I have to have a B12 shot monthly for life now too because of the removal of the TI. Apples no skin or applesauce. Rice and potatoes. Cooked carrots because of the pectin which helps the stomach too. Probiotics too of course helps but the refrigerated live kind is best.
That is interesting because I had my terminal ileum removed.

05-24-2017, 07:02 PM   #71
Edgey
 
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The nutritionist at the hospital told me it would happen and it is since I've been off oxy now. She told me cheese with each meal helps and for some reason a marshmallow. Toast, pretzels also helps me. I have to have a B12 shot monthly for life now too because of the removal of the TI. Apples no skin or applesauce. Rice and potatoes. Cooked carrots because of the pectin which helps the stomach too. Probiotics too of course helps but the refrigerated live kind is best.
yeah i was told marshmallows are good to slow down too lol and i too have B12 shots but every 3 months, i find myself dead toward the end of the 3 months

I've been through all that diet stuff and they effect me in such a minor way its pointless for me to monitor them, think mine is literally bile acids tbf (soon see)
05-24-2017, 08:09 PM   #72
cmack
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Hey Edgey,

You should tell the doc about the lack of energy after you shots. Maybe you need shots more frequently.


Your bud,

cmack
05-24-2017, 09:09 PM   #73
Edgey
 
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Hey Edgey,

You should tell the doc about the lack of energy after you shots. Maybe you need shots more frequently.


Your bud,

cmack
yeah i think i spoke to the nurse about it and she mentioned having them every 10 weeks instead but I'm not sure if there was anything actually done about it lol and the vedolizumab play a big part in the tiredness i think for me, because when i get the injection first 2 weeks after i just sleep pretty much but we shall see if its actually working soon anyway
05-24-2017, 09:35 PM   #74
cmack
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Hi Edgey,

I know B-12 really helped me with my energy levels. Talk to me anytime, I happen to think you are a very nice guy.


I wish you all the best bro!

cmack
05-24-2017, 09:37 PM   #75
ronroush7
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It helped with anemia for me.

05-27-2017, 07:39 PM   #76
GI Jane
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Ya I sure can tell I'm almost due another shot.
06-05-2017, 03:49 PM   #77
Edgey
 
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Got another shot of Vedolizumab before i have a colonoscopy which is very annoying because if it is in fact not working i got to go through all that tiredness one more time for nothing i'm just doubtful it is in fact working because nothing so far has worked for me lol

BTW you guys got any good tips to gain weight because I've got to about/nearly 80kilo/176lbs and i can't get any higher no matter what it seems i do lol and i need it while working out,
Thanks in advance
06-05-2017, 03:50 PM   #78
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Ya I sure can tell I'm almost due another shot.
Same 15th mine is lol i can't wait, it may counter the tiredness of the vedolizumab
06-05-2017, 05:35 PM   #79
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Hi Edgey,

Hang in there bud, I'm glad to hear you are a healthy weight. I hope the tiredness goes away soon.


All my best,

cmack
06-05-2017, 05:38 PM   #80
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Got another shot of Vedolizumab before i have a colonoscopy which is very annoying because if it is in fact not working i got to go through all that tiredness one more time for nothing i'm just doubtful it is in fact working because nothing so far has worked for me lol

BTW you guys got any good tips to gain weight because I've got to about/nearly 80kilo/176lbs and i can't get any higher no matter what it seems i do lol and i need it while working out,
Thanks in advance
I get a lot of protein from chickpeas. I also drink organic soy milk and it seems to help keep the muscle on.
06-05-2017, 06:31 PM   #81
Edgey
 
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I get a lot of protein from chickpeas. I also drink organic soy milk and it seems to help keep the muscle on.

chickpeas would be good to add to the shopping list tbh, thanks lol
06-05-2017, 07:08 PM   #82
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Hey Edgey,

I also notice when I hit a plateau, (no more muscle gain but lots of work). I change things up and instead of 2 sets of 8 reps, maybe lower the weight and go for three sets of 15. Or if you are doing high reps lower them from 12-15 back to 6-8 with a higher weight. If you mix it up you will find that you pass the plateaus.

With weight lifting sometimes less is more as well, it gives us more time for recovery and we end up with better gains.

A couple more tips, concentrate on the muscle you want to work, hone in on it and activate it, (tense it up) before and during your rep, it makes a real difference. Make sure to get plenty of rest and never skip leg day.

Cheers,

cmack
06-06-2017, 09:06 AM   #83
GI Jane
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Coconut oil in smoothies with peanut butter and yogurt and banana adds a lot of calories and is good for you.
06-10-2017, 05:34 PM   #84
Edgey
 
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Hey Edgey,

I also notice when I hit a plateau, (no more muscle gain but lots of work). I change things up and instead of 2 sets of 8 reps, maybe lower the weight and go for three sets of 15. Or if you are doing high reps lower them from 12-15 back to 6-8 with a higher weight. If you mix it up you will find that you pass the plateaus.

With weight lifting sometimes less is more as well, it gives us more time for recovery and we end up with better gains.

A couple more tips, concentrate on the muscle you want to work, hone in on it and activate it, (tense it up) before and during your rep, it makes a real difference. Make sure to get plenty of rest and never skip leg day.

Cheers,

cmack
yeah thanks for the advice bud
yeah i think i need to up my weight and work my way up on reps again :P
but i want to get my diet perfect i might have to start meal prepping lol

Coconut oil in smoothies with peanut butter and yogurt and banana adds a lot of calories and is good for you.
yeah i've ordered some more peanut butter not really bothered with the yogurt because they just don't have a lot of calories in lol and as for banana i put one in my shake now and again depending on whether or not i'm feeling tolerating the bits in my shake :/ lol
06-10-2017, 06:05 PM   #85
cmack
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I wish you the best Edgey.
06-10-2017, 06:37 PM   #86
Edgey
 
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I wish you the best Edgey.
oh i've jumped off the weight gain too because i found i was visiting the toilet more due to the milk so i've now bought an all in one protein powder,
Basically bcaas 35g protein and creatine per shake
06-10-2017, 06:55 PM   #87
cmack
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I hope it helps. Keep us updated on the fitness. I'm curious to find out how it agrees with you and also if you notice any muscle gains. Time will tell. Cheers.
06-11-2017, 05:35 PM   #88
Edgey
 
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I hope it helps. Keep us updated on the fitness. I'm curious to find out how it agrees with you and also if you notice any muscle gains. Time will tell. Cheers.
my one arm is bigger than my other arm right now so i'm in a dilemma on what to do about it lmao i might use my day off just to work on that arm lol left arm is 12.5 inches and my right is 13 inches
but that half of inch looks so big lol i know i have small arms but considering i was really ill and 8 stone(112lbs) not so long ago and im now 12 stone (168lbs) i've come some way
06-11-2017, 05:49 PM   #89
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Hey Edgey,

My left arm is slightly smaller as well, I work out on a heavy bag and my left arm can throw a wicked left hook and great jabs. For some reason it is stronger than my right in that regard. Nobody will notice it but you.

You sound like you are making some pretty steady progress, keep it up. You have come a heck of a long way buddy! Right on! Now if only I could figure out how to grow a mop of hair like yours.... LOL. Enjoy your hair while you can my friend, may it grow that well forever.


Cheers,

cmack
06-11-2017, 10:33 PM   #90
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Yep common....left vs right hand dominant. My boxing coach back in the day made me only hit left for weeks before it became natural......gosh I miss boxing.
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